Herceptin finally bites back

[Tom]

I guess I knew this day might come, but it still caught me by surprise. As we waited for Mom's Herceptin infusion, we were told the onc needed to talk to us. That made my neck hairs stand up, as usual. Well, he told us that Mom's MUGA results showed a rather sudden, and precipitous drop in her LVEF. It had dropped tp 49% , down from 69% three months ago. This news made me sick, as I knew we were about to be denied Herceptin, and we were. The onc wants to wait and watch for a while. That concept has always seemed to me to be the same as watching a house fire start in an ash tray. I hate it, but he's right. What good will Mom be if she's NED, but has no pulse?

I surrendered with almost no fight to his decision, but did ask if he would allow her to receive lapatinib if I could make that happen, and he agreed that he would. So, I now need to finds out exactly what criteria need to be met before Mom might qualify for compassionate use. In the meantime, I am going to try and increase her intake of some of the staples I have been using all along. Those would be ECGC, IP-6, CoQ-10, D-3, and pomegranate, among others. I also intend to add olive leaf extract (D-Lenolate) to the list.

I must say that I feel like we're now doing a high-wire act WITHOUT a net. I guess we shall see soon enough. I really hated to give up the one thing I am convinced has kept the Beast quiet all of these many months. Oh well. More green tea, and lots more prayer.

Tom

[StephN]

Dear Tom -

You dear man - what a time you are having.
If you search back in this board, you will find that most women were only off their Herceptin for a month or two before their MUGA was in a good range again.
Keep in mind also that there is a long half life for Herceptin to remain in the blood stream.

I am not sure that poking more supplements down your Mom is going to make much difference. Maybe take some of RB's advice on the Omegas and try to focus on the heart healthy diet and getting her some exercise will be more useful.

We know you will research this problem and get back to us with some very good information.

[Lisa]

Tom,

I'm sorry about your mom, but she'll probably turn around quickly.

And, unfortunately, I'm not sure your onc is correct. Tykerb can also affect the heart, so in order to apply, one must also have a good MUGA or echo. We have already applied for Tykerb, so I know this to be true.

Love and light,

Lisa

[Lani]

I seem to remember from the posts during ASCO that tykerb caused congestive heart failure MORE often than Herceptin (something around 15% of the time, if I recall correctly)

Herceptin stays in the system for up to six months--so don't fret Some of those antibodies are still fighting their fight.

There is no real reason for the every three month MUGA rule ie, it was decided at random. See if you can convince the oncologist to retest in two months.

Hope some of this helps!

Lani

[Ruth]

Tom,

When I was on my yearly herceptin my LVEF also dropped drastically and they were a little suspicious so I was sent in for a ECHO. This proved the MUGA to post a false positive. I didn't know at that point that MUGA scans are not 100% accurate. I from then on had a combination ECHO and Muga....and kept on receiving Herceptin.

Ruth

[RhondaH]

my thoughts and prayers will be with you and your mother.

Rhonda

[Ruth]

Tom ~ I reread my previous post and it sounded cold which I never meant for it to be. I just wanted to say that sometimes the MUGA is not always accurate and the ECHO can be another diagnostic test than a Dr. can make a decision on. I know this is not good news for you and your mom and I am so sorry for this. I wish the best for your family. Ruth

[Sheila]

Tom
I have to agree with Ruth, get an echo of your Mom's heart....mugas can give a false low reading...the echo will either confirm the reading or raise questions...and the fact that Herceptin stays in the system for a period is good news.
If the echo shows a low ejection factor, give it a month or 2 and retest.
My prayers are with your Mom....she is lucky to have you. I sometimes wonder if my children really know what this diagnosis can mean!

[mamacze]

Dear Tom,
You are such a kind and devoted son for your fortunate mom. It is so discouraging to get this kind of news. Consider getting a repeat MUGA (or even an ECHO), heart function may bounce back. And I think I would tank up on those Omega 3 Fatty acids, it may help her heart function.
Love Kim from CT

[chrisy]

Tom, I'm sorry to hear you got this news, but as others have said, Herceptin does have a long half-life, and in the meantime your mom can recover her strong heart function and may be able to resume Herceptin. This is a scary thing, but you and your Mom have come through scares before. Try to hope for the best, not expect the worst. I'm lousy at links (at least to threads on this board!) but here is an article posted by Lani just last week on this topic.

My thoughts and prayers are with you and your mom.

Chris
http://www.her2support.org/vbulletin/images/icons/icon1.gif Here is a study where some patients agreed to cardiac biopsy!
1: J Clin Oncol. 2005 Nov 1;23(31):7820-6. Links

Reversibility of trastuzumab-related cardiotoxicity: new insights based on clinical course and response to medical treatment.

Ewer MS, Vooletich MT, Durand JB, Woods ML, Davis JR, Valero V, Lenihan DJ.

Department of Cardiology, The University of Texas MD Anderson Cancer Center, Houston, 77030, USA. mewer@mdanderson.org

PURPOSE: Trastuzumab is an important biologic agent with significant activity in breast cancers that overexpress the HER2/neu marker. However, trastuzumab is associated with cardiotoxicity that has not yet been fully explored. We present our experience with patients who developed trastuzumab-related cardiotoxicity. PATIENTS AND METHODS: Over a 4-year period, 38 patients with HER2/neu-positive breast cancer were referred for suspected trastuzumab-related cardiotoxicity. All patients had previously received anthracycline-based chemotherapy. Results After doxorubicin but before trastuzumab, the mean (+/- standard deviation) left ventricular ejection fraction (LVEF) was 0.61 +/- 0.13, and the LVEF decreased to 0.43 +/- 0.16 after trastuzumab (P < .0001). After withdrawal of trastuzumab, the LVEF increased to 0.56 +/- 0.11. Mean time to recovery of LVEF was 1.5 months and was temporally associated with medical treatment in 32 (84%) of the 38 patients but occurred without treatment in six patients (16%). Increases in LVEF were noted in 37 of the 38 patients. Twenty-five of these patients were re-treated with trastuzumab; three patients had recurrent left ventricular dysfunction, but 22 patients (88%) did not. All re-treatment patients continued on their therapeutic regimen for heart failure when rechallenged with trastuzumab. Nine patients underwent endomyocardial biopsy. Ultrastructural changes were not seen. CONCLUSION: Patients who develop cardiotoxicity while receiving trastuzumab therapy generally improve on removal of the agent. The mechanism of trastuzumab-related cardiac dysfunction is different from that of anthracycline cardiotoxicity, in part, demonstrated by the absence of anthracycline-like ultrastructural changes. Reintroducing trastuzumab may be appropriate for some individuals who previously have experienced trastuzumab-related cardiac dysfunction.

PMID: 16258084 [PubMed - indexed for MEDLINE]

"ultrastructural changes" refers to findings such as changes in subcellular organelles ( including abnormal appearance of mitochondria)
http://www.her2support.org/vbulletin/images/statusicon/user_offline.gif http://www.her2support.org/vbulletin/images/buttons/reputation.gif (http://www.her2support.org/vbulletin/showthread.php?t=24540#) http://www.her2support.org/vbulletin/images/buttons/report.gif (http://www.her2support.org/vbulletin/report.php?p=97537)

[Tom]

I wanted to say thanks to you all, for posting your kind and informative responses. I will try to cover all the things that were mentioned.

With respect to increasing Mom's current supplements, I am increasing only those that have been shown to have a benefit as stand-alone supplements, rather than one's which have synergy with Herceptin. I am especially increasing Omega-3 components of Mom's intake, since it has been shown that Omega-3 fatty acids themselves, can down-regulate Her2 overexpression. (stop smiling R.B.)

And dear Ruth. PLEASE don't ever apologize for anything you post when responding to me. The simple fact that anyone takes time out of their own day-to-day fight against this miserable scourge to offer comfort or treatment advice to me, is a true blessing, no matter what the content of their message. You advice on a follow-up echo was not at all cold, is well taken, and will be done.

When I heard the onc say that Mom has "had an awful lot of testing", I immediately became paranoid, and wondered if he didn't get a late-night threatening phone call from Medicare or her insurance company...lol. I must admit that when I heard we needed to speak to him rather than go in for the infusion, my first thought was that we were at the end of her year of treatment (within a few weeks), and he would know longer be able to write for Herceptin. I was quite ready to tear him a new "colonoscopy access port" and argue for further Herceptin.

A quick review of lapatinib cardiac concerns seemed to indicate between a 1% to 6% section of the treated population had a negative cardiac effect as a result of treatment. Of those that did, there seemed to be very few with a significant drop in LVEF. I have to do a lot more reading to clarify those findings, but I have time for that now.

The onc commented that this time away from treatment would "give us a break". He is actually right, and I will use that time to do some long put off things with Mom. I have planned a trip to North Carolina, one to Chicago, and one to my favorite place on earth, the Eastern Shore of Virginia. I had contemplated moving us down to Virginia, but I was afraid to get that far from the people and treatment I had grown to trust. Remember that the rainbow in the little photo in my posts is on the Eastern Shore. It will give us both a chance to recharge our batteries, and hopefully Mom's heart. I just know that a heart as big as Mom's has some time left before it goes silent, and I want to be as selfish as possible and drink up as much of her love as I can while she's still with me. Her dementia is fairly advanced now, as she can barely speak five words, but when I look her in the eyes and tell her I love her, she still tears up, and I know she is in there.

I trust that God will let me know when it's time to let her rest. I explained to the onc, who along with other doctors gives me that quizical look that says "Why are you going through all of this at her age?", that I was determined that after watching my Dad suffer like a wounded animal, I was going to do everything in my power to see that the Beast did not claim her as his prize as well. I think he understood (please refer to "access port" above).

Thank you all again for your gracious and selfless support through this journey. Regardless of however and whenever this story ends, I will always remember this family that Joe and Christine have so lovingly created within the ether of this thing called the Internet. It is a great place of love and hope, where seeming strangers can come to "drink and quench their thirst for knowledge and support".

I will keep you informed as to what transpires here and which direction Mom's treatment goes next. Take care and God Bless you all.

With Much Love,
Tom

[jhandley]

Tom
If i recall your mum was/is on 300 mg of Q10.....i myself cant seem to take more than 200 mg/day as it keeps me awake at night. i am having a MUGA in 4 weeks time..i have been on herceptin for 10 months. I am sure that a few weeks break will do your mum no harm and just up Q10 and fish oil in the mean time. Thinking of you. i think the olive leaf extract is very good too.

Jackie

[IRENE FROM TAMPA]

Tom as I read your post this morning I welled up with tears to hear the devotion that you have for your mom.

As a mother of three grown daughters, I know what this means to a mother.
If we leave anything behind, is to know that we did a good job with our children and that they are as caring as you seem to be.

You will always know that you are doing the best that you can for your mother and I know that she knows that and loves you even more for it.

Tom - also take care of yourself along the way.

[madubois63]

Wow - Tom you are amazing. Do you want a girlfriend?? Such devotion and love. I am in tears right now, but also laughing at your "colonoscopy access port" and "please refer to "access port" above" remarks - LOL!!! I too had to take a Herceptin "vacation" (went to Bermuda), and within three months my heart was better than ever. Enjoy the traveling - it will be good for both of you!!!
Maryann

[Tom]

Jackie,

Thanks for the tip on olive leaf extract. I will be getting some any day now. I have been giving her 300MG/day of CoQ-10. I may increase it to 400MG, as it has shown anti-proliferative effects in some cancers at doses of 390MG/day.


Irene,

My Father was much older, and came from a time and place where one's elders were cared for at home as long as they lived. There were NO nursing homes where he grew up on the Eastern Shore of Virginia. I took my cues from the way he lived his life, and I promised him on his death bed that she would never see the inside of a nursing home.


Maryann,

Thank you for your kind words. I love my Mom so much, and I can't bear the thought of being without her. She is so sweet. The medical people we meet wherever we go, fall in love with her immediately. The nurses give me a hard time if her hair isn't done to their standards, and have even stopped to fix it or apply make-up. She seems to perk up at the attention.
As far as girlfriends go, I haven't had much luck with them over the years...lol. I guess I'm not meeting the right ones. If I had the time for a girlfriend, it would be great, but I am afraid she would not be happy with all the time I need to spend caring for Mom. The neighbors think I am either gay or the reincarnation of Norman Bates. I told them if they ever see Mom sitting by the window rocking, to call the police.
I hope you enjoyed Bermuda. I would love to do some wreck diving even here or in Virginia, as I really miss it. I will try to enjoy our little road trips. Just seeing something besides the parking lot attendant at the University of Penn will cheer us both up.

Take Care All,
Tom